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End-of-life care

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https://www.readbyqxmd.com/read/28943359/how-well-do-current-measures-assess-the-impact-of-advance-care-planning-on-concordance-between-patient-preferences-for-end-of-life-care-and-the-care-received-a-methodological-review
#1
REVIEW
Stephanie B Johnson, Phyllis N Butow, Ian Kerridge, Melanie L Bell, Martin Tattersall
No abstract text is available yet for this article.
September 21, 2017: Journal of Pain and Symptom Management
https://www.readbyqxmd.com/read/28942904/a-brief-historical-perspective-of-cancer-rehabilitation-and-contributions-from-the-national-institutes-of-health
#2
REVIEW
Lynn H Gerber, Bonnie Hodsdon, Leora Ellen Comis, Leighton Chan, John I Gallin, Charles L McGarvey
People who have cancer diagnoses often need care throughout their lives through all stages of their illness. These stages include diagnosis, primary treatment, survivorship, and end of life. The management of people with cancer, now a common and chronic illness with long-term survival improving, is complex, challenging, and rapidly changing. Rehabilitation for people with cancer diagnoses is a new specialty and is charged with providing care throughout the trajectory of illness and wellness to maximize potential for function and mitigate disability...
September 2017: PM & R: the Journal of Injury, Function, and Rehabilitation
https://www.readbyqxmd.com/read/28942701/feeding-tubes-and-health-care-service-utilization-in-amyotrophic-lateral-sclerosis-benefits-and-limits-to-a-retrospective-multicenter-study-using-big-data
#3
Keith M Swetz, Stephanie M Peterson, Lindsey R Sangaralingham, Ryan T Hurt, Shannon M Dunlay, Nilay D Shah, Jon C Tilburt
Amyotrophic lateral sclerosis (ALS) is a progressive, fatal neurologic disorder with predictable challenges regarding disease progression and end-of-life care. These include need for respiratory and nutritional support. Little is known about how such choices impact end-of-life health service utilization for these patients. Using OptumLabs Data Warehouse, a large administrative claims database with more than 150 million privately insured, geographically diverse enrollees, we sought to explore outcomes associated with the use of enteral nutrition (EN)...
January 1, 2017: Inquiry: a Journal of Medical Care Organization, Provision and Financing
https://www.readbyqxmd.com/read/28941964/unmet-palliative-care-needs-among-patients-with-end-stage-kidney-disease-a-national-registry-study-about-the-last-week-of-life
#4
Lena Axelsson, Anette Alvariza, Jenny Lindberg, Joakim Öhlén, Cecilia Håkanson, Helene Reimertz, Carl-Johan Fürst, Kristofer Årestedt
CONTEXT: End-stage kidney disease (ESKD) is characterized by high physical and psychological burden and therefore, more knowledge about the palliative care provided close to death is needed. OBJECTIVES: To describe symptom prevalence, relief and management during the last week of life, as well as end-of-life communication, in patients with ESKD. METHODS: This study was based on data from the Swedish Register of Palliative Care. Patients aged 18 or older who died from a chronic kidney disease, with or without dialysis treatment (ICD-10-SE; N18...
September 20, 2017: Journal of Pain and Symptom Management
https://www.readbyqxmd.com/read/28941750/is-30-day-mortality-after-admission-for-heart-failure-an-appropriate-metric-for-quality
#5
Robert T Faillace, Gregory W Yost, Yashasvi Chugh, Jeffrey Adams, Beni R Verma, Zaid Said, Ibrahim Ismail Sayed, Ashley Honushefsky, Sanjay Doddamani, Peter B Berger
BACKGROUND: The Centers for Medicare and Medicaid Services (CMS) model for publicly reporting national 30-day-risk-adjusted mortality rates for patients admitted with heart failure fails to include clinical variables known to impact total mortality or take into consideration the culture of end-of-life care. We sought to determine if those variables were related to the 30-day mortality of heart failure patients at Geisinger Medical Center. METHODS: Electronic records were searched for patients with a diagnosis of heart failure who died from any cause during hospitalization or within 30-days of admission...
September 20, 2017: American Journal of Medicine
https://www.readbyqxmd.com/read/28941608/economic-evaluation-of-left-ventricular-assist-devices-for-patients-with-end-stage-heart-failure-who-are-ineligible-for-cardiac-transplantation
#6
Derek S Chew, Braden Manns, Robert J H Miller, Nakul Sharma, Derek V Exner
BACKGROUND: Continuous flow (CF) left ventricular assist devices (LVADs) improve survival in end-stage heart failure patients who are ineligible for cardiac transplantation. Their use in this population (referred to as destination therapy) is increasing in many countries, yet they are not routinely funded for this indication in Canada. We assessed the cost-effectiveness of destination therapy CF-LVADs from the perspective of the Canadian health care payer. METHODS: A Markov model was used to project the outcomes and costs of 2 treatment pathways, CF-LVAD implantation and medical management alone, in an end-stage heart failure patient cohort ineligible for transplantation...
October 2017: Canadian Journal of Cardiology
https://www.readbyqxmd.com/read/28941542/end-of-life-and-bereavement-care-in-pediatric-intensive-care-units
#7
REVIEW
Markita L Suttle, Tammara L Jenkins, Robert F Tamburro
Most childhood deaths in the United States occur in hospitals. Pediatric intensive care clinicians must anticipate and effectively treat dying children's pain and suffering and support the psychosocial and spiritual needs of families. These actions may help family members adjust to their loss, particularly bereaved parents who often experience reduced mental and physical health. Candid and compassionate communication is paramount to successful end-of-life (EOL) care as is creating an environment that fosters meaningful family interaction...
October 2017: Pediatric Clinics of North America
https://www.readbyqxmd.com/read/28941298/symptom-management-and-psychological-support-for-families-are-the-cornerstones-of-end-of-life-care-for-children-with-spinal-muscular-atrophy-type-1
#8
Chiara Di Pede, Caterina Agosto, Valentina De Tommasi, Alessandra De Gregorio, Franca Benini
AIM: This study described end-of-life care for children affected by spinal muscular atrophy type 1 (SMA1), which is characterised by progressive muscle weakness and develops in the first six months of life. METHODS: We retrospectively analysed 17 children (13 boys) who attended the University of Padua's paediatric palliative care centre in Italy from March 2000 to March 2015. All the children received supportive care without proactive respiratory intervention to prolong survival...
September 23, 2017: Acta Paediatrica
https://www.readbyqxmd.com/read/28940060/psychosocial-implications-of-living-with-catecholaminergic-polymorphic-ventricular-tachycardia-in-adulthood
#9
Ebony Richardson, Catherine Spinks, Andrew Davis, Christian Turner, John Atherton, Julie McGaughran, Christopher Semsarian, Jodie Ingles
Catecholaminergic polymorphic ventricular tachycardia (CPVT) is a rare inherited arrhythmogenic disease with a high risk of sudden cardiac death. The impact on health-related quality of life (HR-QoL) and psychosocial outcomes is not known. We sought to provide the first description of HR-QoL and psychosocial wellbeing of adults with CPVT, parents of affected children and at-risk relatives. Participants were recruited through the Australian Genetic Heart Disease Registry and invited to complete a cross-sectional survey comprising a number of validated scales and open-ended questions...
September 23, 2017: Journal of Genetic Counseling
https://www.readbyqxmd.com/read/28939708/the-decisions-interventions-and-goals-in-implantable-cardioverter-defibrillator-therapy-dignity-pilot-study
#10
Daniel B Kramer, Daniel Habtemariam, Yaw Adjei-Poku, Michelle Samuel, Diane Engorn, Matthew R Reynolds, Susan L Mitchell
BACKGROUND: Implantable cardioverter-defibrillators (ICDs) are commonly implanted in older patients, including those with multiple comorbidities. There are few prospective studies assessing the clinical course and end-of-life circumstances for these patients. METHODS AND RESULTS: We prospectively followed 51 patients with ICDs for up to 18 months to longitudinally assess in terms of (1) advance care planning, (2) health status, (3) healthcare utilization, and (4) end-of-life circumstances through quarterly phone interviews and electronic medical record review...
September 22, 2017: Journal of the American Heart Association
https://www.readbyqxmd.com/read/28939306/training-surgeons-and-anesthesiologists-to-facilitate-end-of-life-conversations-with-patients-and-families-a-systematic-review-of-existing-educational-models
#11
Katherine E Bakke, Stephen P Miranda, Manuel Castillo-Angeles, Christy E Cauley, Elizabeth J Lilley, Rachelle Bernacki, Angela M Bader, Richard D Urman, Zara Cooper
OBJECTIVE: Despite caring for patients near the end-of-life (EOL), surgeons and anesthesiologists report low confidence in their ability to facilitate EOL conversations. This discrepancy exists despite competency requirements and professional medical society recommendations. The objective of this systematic review is to identify articles describing EOL communication training available to surgeons and anesthesiologists, and to assess their methodological rigor to inform future curricular design and evaluation...
September 19, 2017: Journal of Surgical Education
https://www.readbyqxmd.com/read/28938252/emotional-impact-of-end-of-life-decisions-on-professional-relationships-in-the-icu-an-obstacle-to-collegiality
#12
Alexandra Laurent, Magalie Bonnet, Gilles Capellier, Pierre Aslanian, Paul Hebert
OBJECTIVES: End-of-life decisions are not only common in the ICU but also frequently elicit strong feelings among health professionals. Even though we seek to develop more collegial interprofessional approaches to care and health decision-making, there are many barriers to successfully managing complex decisions. The aim of this study is to better understand how emotions influence the end-of-life decision-making process among professionals working in ICU. DESIGN: Qualitative study with clinical interviews...
September 21, 2017: Critical Care Medicine
https://www.readbyqxmd.com/read/28938102/self-management-support-at-the-end-of-life-patients-carers-and-professionals-perspectives-on-managing-medicines
#13
N Campling, A Richardson, M Mulvey, M Bennett, B Johnston, S Latter
BACKGROUND: Pain is a frequently reported symptom by patients approaching the end of life and well-established that patients and carers hold fears relating to opioids, and experience side effects related to their use. The management of medicines is intrinsic to achieving effective pain relief. The concept of self-management support whilst well characterised in the context of chronic illness has not been elaborated with respect to end of life care. AIM: To identify patient, carer and professional views on the concept of self-management support at end of life, specifically in relation to analgesia and related medicines (for side-effect management) in order to describe, characterise and explain self-management support in this context...
September 6, 2017: International Journal of Nursing Studies
https://www.readbyqxmd.com/read/28937333/provider-prioritized-domains-of-quality-in-pediatric-home-based-hospice-and-palliative-care-a-study-of-the-ohio-pediatric-palliative-care-and-end-of-life-network
#14
Rachel Thienprayoon, Melissa San Julian Mark, Daniel Grossoehme
BACKGROUND: Children receiving hospice and palliative care (HPC) differ from adults in important ways. Children are more likely to have rare diagnoses, less likely to have cancer, have longer lengths of stay on hospice, and are more likely to be technology dependent than adults. The National Consensus Project (NCP) in Palliative Care established domains of quality for HPC, but these domains have not been evaluated for applicability in children. OBJECTIVES: This study aims to establish consensus stakeholder-prioritized domains of high-quality pediatric home-based hospice and palliative care (HBHPC)...
September 22, 2017: Journal of Palliative Medicine
https://www.readbyqxmd.com/read/28937317/what-is-important-to-patients-in-palliative-care-a-scoping-review-of-the-patient-s-perspective
#15
Helen von Post, Petra Wagman
BACKGROUND: The research conducted in palliative care is often medically oriented. There are few studies clarifying the patient's preferences, priorities and desires in palliative care. The occupational therapy research conducted mostly concerns occupational therapy interventions based on the profession's experiences. Further knowledge is needed regarding what patients in palliative care want to prioritize. AIM: The aim was to describe what patients in palliative care describe as important at the end of life...
September 22, 2017: Scandinavian Journal of Occupational Therapy
https://www.readbyqxmd.com/read/28936558/how-do-treatment-aims-in-the-last-phase-of-life-relate-to-hospitalizations-and-hospital-mortality-a-mortality-follow-back-study-of-dutch-patients-with-five-types-of-cancer
#16
Mariska Oosterveld-Vlug, Gé Donker, Femke Atsma, Linda Brom, Yvonne de Man, Stef Groenewoud, Bregje Onwuteaka-Philipsen
PURPOSE: The purpose of this study is to describe and compare the relation between treatment aims, hospitalizations, and hospital mortality for Dutch patients who died from lung, colorectal, breast, prostate, or pancreatic cancer. METHODS: A mortality follow-back study was conducted within a sentinel network of Dutch general practitioners (GPs), who recorded the end-of-life care of 691 patients who died from one of the abovementioned cancer types between 2009 and 2015...
September 22, 2017: Supportive Care in Cancer: Official Journal of the Multinational Association of Supportive Care in Cancer
https://www.readbyqxmd.com/read/28935629/paediatric-advance-care-planning-survey-a-cross-sectional-examination-of-congruence-and-discordance-between-adolescents-with-hiv-aids-and-their-families
#17
Maureen E Lyon, Ronald H Dallas, Patricia A Garvie, Megan L Wilkins, Ana Garcia, Yao Iris Cheng, Jichuan Wang
OBJECTIVES: To identify patient-reported paediatric advance care planning (pACP) needs of adolescents living with HIV and to examine the congruence with their family's perception of their needs. METHODS: A cross-sectional survey among six paediatric hospital-based outpatient HIV specialty clinics. Participants included 48 adolescent/family dyads (n=96 participants) within a larger study facilitating pACP. The main outcome measure was the Lyon Advance Care Planning Survey - Adolescent and Surrogate Versions-Revised...
September 21, 2017: BMJ Supportive & Palliative Care
https://www.readbyqxmd.com/read/28935131/which-research-questions-are-important-for-the-bereaved-families-of-palliative-care-cancer-patients-a-nationwide-survey
#18
Akihiro Sakashita, Tatsuya Morita, Megumi Kishino, Maho Aoyama, Yoshiyuki Kizawa, Satoru Tsuneto, Yasuo Shima, Mitsunori Miyashita
CONTEXT: Bereaved family members are present from diagnosis to the end of life and can look back and evaluate the experience; additionally, the family itself is also an important subject in the care of the patient. Therefore, while it is essential to determine the priority research issues from the viewpoint of the patients and health care workers, it is also crucial to know the important research themes from the viewpoint of the bereaved family members. OBJECTIVES: The purpose of this study was to identify research priorities for palliative care in Japan, based on the viewpoint of bereaved family members...
September 18, 2017: Journal of Pain and Symptom Management
https://www.readbyqxmd.com/read/28935129/environmental-design-for-end-of-life-care-an-integrative-review-on-improving-quality-of-life-and-managing-symptoms-for-patients-in-institutional-settings
#19
REVIEW
Rana Sagha Zadeh, Paul Eshelman, Judith Setla, Laura Kennedy, Emily Hon, Aleksa Basara
CONTEXT: The environment in which end-of-life care is delivered can support or detract from the physical, psychological, social, and spiritual needs of patients, their families, and their caretakers. OBJECTIVES: This review aims to organize and analyze the existing evidence related to environmental design factors that improve the quality of life and total well-being of people involved in end-of-life care and to clarify directions for future research. METHOD: This integrated literature review synthesized and summarized research evidence from the fields of medicine, environmental psychology, nursing, palliative care, architecture, interior design, and evidence-based design...
September 18, 2017: Journal of Pain and Symptom Management
https://www.readbyqxmd.com/read/28933994/decision-making-for-people-living-with-dementia-by-their-carers-at-the-end-of-life-a-rapid-scoping-review
#20
Sue Barker, Mary Lynch, Jane Hopkinson
BACKGROUND: There are an increasing number of people living with dementia, as well as an expectation that care decisions are made collaboratively with those with the disease entering the end stage and their families. This has increased the burden on family carers. AIM: To explore the evidence on the decisional support needs of informal carers of people with end-stage dementia. DESIGN: A rapid scoping review was undertaken of peer-reviewed publications between 2000 and 2016, which included all health-care settings and the person's own home...
September 2, 2017: International Journal of Palliative Nursing
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